Saturday, January 17, 2009

Laura is doing really well. She had a bunch of visitors today and Simon got some good social time with my mom in the morning and friends who watched him this afternoon so I could go see her.

Somehow Laura ended up in the stroke unit and her room had 3 ladies, not one a day under 85, who had all had strokes. Two were very quiet. One, not so much.

The first night, a nurse tried to draw blood and Laura heard the lady slap the nurse across the face. Last night, she was up all night, calling out for different people.

This is a BIG problem. For those of you who knew Laura when she was in the hospital for her motorcycle accident, think Violet. For those of you who did not know Laura then, or who do not know the story...here goes.

In 1996, Laura almost died in a motorcycle accident when she was cut off by a truck towing a small trailer. She was run over by the trailer and then a KiaSephia stopped *on top* of her. In a moment rarely seen outside movies, nearby drivers got out of their cars and lifted the small SUV off of her. By that point, an ambulance was there, which was really, really important because her femoral artery was severed and the car was actually holding enough pressure that she didn't bleed out right there. She was rushed to SF General where a visiting surgeon from Amsterdam used an experimental technique he was perfecting that involved something like shooting foam into the vessel to temporarily stop the bleeding so it could be fixed. Yea! Femoral artery repaired. No bleeding out on 101!

But, um, she also had a crushed pelvis, torn aorta, punctured lung, multiple rib fractures, one broken clavicle and one dislocated one. No head injuries though, miraculously. (That came about 10 years later.)

They weren't even expecting her to leave the hospital for at least 6 weeks, but Tough-As-Nails-Fitch defied expectations (sense a theme in this bloodline?) and was only in the hospital for 3 weeks and rehab for 3 weeks. However, in those 3 weeks, she made a very special friend.

Violet.

Violet was her totally demented roommate in the hospital. The first night, Laura's Dad, being the very chummy fellow that he is, introduced himself and his daughter, "Laura", explaining that they would be roommates. Violet didn't seem to hear him and everyone settled down.

Until that night.

The *only* name Violet could remember in her entire life now, was "Laura".

And Violet was thirsty.

VERY thirsty.

All night long this is is what my poor wife heard (think Southern drawl):

"Laaauuuuuurrrrrraaaa! Can I get a drink a' waaaaaauuutah?"
"Laaaaauuuuurrrrraaaa! I'm so very thirsty"
"Well, theeen can I get a swizzle stick, ?"

(Laura did a little research later, wondering what the hell a swizzle was and how it would help thirst. Evidently it's a rod of ice frozen like a stick and used to stir drinks).

After a few nights of this, Laura finally gets moved. She ends up in an empty semi-private room, and is so excited to finally be getting some sleep. Her curtain is drawn, she's just drifting off when they wheel in her roommate. She's nervous after her last experience, but the new person is quiet.

Then, just as she is falling asleep, she hears "Laaaaaaaaaaaaauuuuuuuuuuuuurrrrrrrrrrrrrrrraaaaaaaaaaaaaaaa".

Yup. Violet is her roommate. Again.

Which leads me to this evening. The charge nurse asks if Laura wants to move, with a subtle nod and grimace at our noisy neighbor. She gives us the option of checking out the new potential roommate. We're warned that she's on her phone a lot, but evidently sleeps at night. Laura goes to introduce herself and see if they can agree on a quiet night. Sounds like all systems are go. We schlep her stuff and get her settled in and then...it starts.

The lady is completely off her rocker. She is cursing and muttering and saying "I never get a goddamn night to myself" and goes on like this for almost the entire next hour. She comes around the corner and starts ranting about how she can't get anything here, the food is terrible, etc, etc and is so completely off that when I start talking to Laura, obviously trying to tune her out, she just keeps going. She finally stops, goes back to her bed and Laura and I look at each other in horror. I just say one word to her.

Violet.

I think it's gonna be a looooong night for my dear wife. You know it's bad when you get better sleep at home with a 9 month old baby.

Friday, January 16, 2009

Laura got back to her bed about an hour ago and looks good. She has a drain and an IV but totally looks like herself and her pain seems pretty well under control. I feel such a sense of relief that the scariest part is over (I hope!). I hope to sleep better tonight, for sure, although I feel terrible for leaving her alone at night :-(

Laura's sister, Jen, had the best analogy yesterday. She said, "if this were a movie, this is part where people would just get up and walk out because the plot is so absurd". I'd have to agree. Can I get my money back?

This is a great analogy someone from our Cardiomyopathy listserv just posted. It really sums up our feelings about what is happening with Simon (and to some extent these days, Laura!).

Welcome To Hollandcopyright 1987, by Emily Perl Kingsley

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting. After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland.""Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay. The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met. It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned." And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

I just got a call from the surgeon about 20 minutes ago saying that they were done with the surgery. She said the surgery was a bit difficult because her gall bladder was so inflamed and that she was going to have a drain which means she will be here for an extra night or 2 (so probably going home Sunday.

I made sure to ask if they were still able to do it laparoscopically and she said yes. I would have hugged her if we were in person, because the recovery for non-laparoscopic gall bladder removal is 4-6 weeks instead of 10 days. Uh...big, big difference.

I'm waiting for Laura to get moved from the recovery room to her regular room so I can see her. My Mom is with Simon and is staying over again tonight to take care of him. It's awesome- she's been trained on all his meds, she can work the pump like a pro and she even bought him his first pair of big boy shoes today :-)

Laura and I were talking earlier about how freaking blessed we are. Sometimes it's mindboggling, even with all this crappy medical stuff. We have 6 parents that support us in so many different ways, we have incredible friends and extended family who keep stepping up to the plate, we have had really good experiences with our various hospital and medical teams and we have a beautiful, clever, sweet baby that charms the pants off of everyone he meets.

It could definitely be worse. Okay, so it could definitely be better, but it could sure be worse.

Our friend Sonya was at the hospital do to a visit shift and just called and told me that Laura is evidently JUST going into surgery. I left at 1 pm when they took her for pre-op and have been on pins and needles and freaking out that something happened since the nurse said "she's still in surgery" when I called 20 minutes ago.

Laura is scheduled for surgery for 1 pm today. Yea! She's looking good- very stony on Morphine, but good.

This morning (Shimmy had another great night, thank god) I will go to the hospital to visit Laura, go to a work meeting, go to Children's where my Mom will meet me with Simon and have a consult with the anaesthesiologist for Simon's surgery next week and then go to Alta Bates to be with Laura before HER surgery.

Thursday, January 15, 2009

Okay...let's start with the bad because the good is kinda funny after that. At 3 am last night, Laura's gall bladder pain got so bad we called our friend Dre to take her to the ER. They admitted her, gave her all sorts of good drugs and will be talking to her today about when we might take the damn thing out. She sounds good- mellow for sure (thank you Morphine!) and mostly just wants to get the frickin thing over with.

The good.

Simon slept through the WHOLE NIGHT. That's right. From 7:45 pm to 7:45 am with only a whimper at 5 am b/c of a poopy diaper and he slept through the diaper change. Did we get to enjoy this momentous event? No. I was awake from 2:30- 5:30 am. Damn it.

The ugly...there's no ugly. It just made for a good title :-)

Actually, here are cute pictures from our Calistoga trip to make up for scaring you about ugly:

Simon, swimming with his Muti Skeeter

Feelin' nice and full after a burger, fries and a shake at Taylor's Refresher (kidding!) I'm taking today off and my Mom will be covering for Simon tomorrow so I'll be back at work. My Mom is going to have fun getting the baby and all his gear out the door and in the car as has an anesthesiologist appt tomorrow to talk about HIS surgery.

Monday, January 12, 2009

We had a very sweet Saturday in the mineral pools at the Calistoga spa for my birthday. I had about 15 friends come up to celebrate with a very mellow day lounging in warm water, eating fancy bread and cheese and then going to Taylor's Refresher on the way home for yummy burgers, fries and shakes.

Simon loved being in the water. He did not love staying in a hotel so much. He has had 3 crappy nights sleep with last night taking the prize. He woke up every hour from 8-11 and then about every 15 minutes from 11- 4 am and finally let us sleep a chunk until 5ish.

Not sure if he's teething, growing or just torturing us. We ended up putting him in the bed so we wouldn't have to keep getting up. He wakes up with a screechy cry and is flailing all over the place. His right leg we have named "Devil leg". If he is lying down, awake, it swings in circles, wagging around, thumping anything in its path (which last night included me so at one point I ended up with my head at the end of the bed). His left leg he kept wanting to pull up to his ear, as it was in utero. Cute, annoying little baby. Oh yeah, and Laura's gall bladder started acting up again, so we were managing the fussy baby with her blitzed out on pain meds. We started laughing about the whole thing at about 4 am.

About Us

Team Shimmy was started the day our baby, Simon (aka Shimmy), became suddenly ill (8/1/08) with a rare heart condition called Cardiomyopathy. That day, friends and family rallied around us to form Team Shimmy. This team, which has grown to include new friends and strangers from all corners of the world, has sustained us with love, food, kind words and listening ears.
We spent 4 tumultuous months in the ICU at Children's Hospital Oakland. Simon has been steadily improving since that day. He was fed through a tube in his belly (a Mic-key) until December 2013, was diagnosed on the autism spectrum, receives various types of therapies and is still on meds. Oh, and he's the happiest, most engaging kid we've ever seen. Jaime (Mama) works in public health and Laura (Mommy), a former school social worker, stays home to take care of Simon (and to take him to his MANY appointments). To see a 10-min documentary about our family, go to www.youtube.com/watch?v=uGh8dFp2oqk.
This blog is a chronicle of our experience thriving in the middle of a nightmare. You'll laugh a lot more than you expect. Promise.
Contact us at lafitch@gmail.com or jaimejenett@gmail.com